Monday, January 3, 2011

Rogue DNA

One of my resolutions for 2011 is to start actively blogging again. I have about 80 drafts of blogs just waiting to be posted ~ many a time I have started with great intentions only to loose my train of thought in mid sentence...

About a year ago I found a website looking for Chiarians for a genetic study. Of course I definitely wanted to be included in the study and inquired as to what was involved. After a long conversation with the study's coordinator I found out that there would be some paperwork inquiring about the medical history of me and my family and a phone interview. Then, there would be a traveling phlebotomist that would eventually be in my area, come to my home and take blood samples from all family members.

Given the chance to contribute to research and science for the chance in finding a cure for Chiari ~ I was beyond thrilled to share my DNA. Although many doctors are in denial, Chiari couldn't possibly be genetic! Where's the proof? ~ WE know that it most certainly is and this genetic study will further prove the connection.

The Genetics of Chiari Type I Malformation is still looking for volunteers ~ you, too, could contribute to science and possibly help us find a cure for CHIARI! I have printed the details below ~ If you have any questions, please feel free to contact me.

The Duke Center for Human Genetics is actively recruiting families who have TWO OR MORE family members with Chiari type I malformations, with or without syringomyelia. These family members must be related to each other by blood, and BOTH must be willing to participate. At the current time, we are not able to enroll families in which the only diagnosed members are a parent and child. If the family meets these criteria and wants to receive study participation information, please contact the study coordinator at 1-877-825-1694 or More information can be found on our website


Amy H said...

I would love to know what kind of results came out of this study. Don't know if you remember me but you followed my blog. I just had my 2 year from decompression and am doing really well. would love to catch up.

Amy H said...

I don't know if you remember me but you followed my blog. I am 2 years out and doing really well. I would love to catch up with you and see how you are doing. I am also very curious as to what this study discovered.